Lots of threds in teh past have been about surgery and yes or no for certain situations, and lots have been about genital mutilations and some on parents rights.I could of stuck this in several forums, but in the end decided to put it here, maybe Im wrong to do so.At any rate, whats the general member concensus on this little gem?CHICAGO (AP) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home. The case has captured attention nationwide and abroad, and has been decried over the Internet as perverse and akin to eugenics. Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up. "This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients." The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either. Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it. Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel." She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help. An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents says it has succeeded so far. She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog. "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote. University of Pennsylvania ethicist Art Caplan said the case is troubling and questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," Caplan said. He called it another example of the "slippery slope issue, with other parents thinking the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood. It's not the right strategy." But Ashley's parents say keeping her small will help reduce risks for bedsores and other conditions that can afflict bedridden patients. Also, they say preventing her from going through puberty means she won't experience the discomfort of having periods or growing breasts that might develop breast cancer, which runs in the family. "Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents' blog says. Still, they wrote, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers." Right? Wrong? appaling but needed?
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What the hell, lets try it in the community forum
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I do not agree with the parent's way of trying to help their daughter. I won't say whether it is right or wrong.
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I think it is wrong. I understand the removal of the uterus, plenty of women live without thiers. But the horomones and tissue removal....that seems crazy. And I think the "she is a blessing and not a burden" comment is a load of crap. She obviously is a burden to them if they want to stunt her growth to make life easier on themselves.
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Im with you on this, I understand thier POV, but I jsut cant get behind doing what they are doing to the kid. It would be harder to deal with some shti if she reached a normal size, but surely it inst immpossible, If yuo can spend the money for the drugs and surgery, certainly you can afford to spend it on better "tools" for her care and transportation ?
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I read it this morning.Is taking care of an invalid a burden? Hell yeah. The child is a vegetable. Taking care of an adult vegetable is much worse for both.Ethically, it's questionable, but I completely understand why they did it.
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I understand it being a burden, shit my sons diabetic and at times thats a real pain inthe ass. Nowhere near the level these people are deal with, but a pain none the less.I can udnrestand WHY they do it, I jsut have to question of they should be able to do it. Mostly the entire shitty deal makes me sad for the girl, as well as her parents. Noone ever expects to have to make a decision like that and have the world view thier private moments and throw bricks at them, nto to mention teh situation to begin with.
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I didn't bother reading this article but I read it in the paper this morning. Anyways...(just putting on my law student hat, playing the devil's advocate)What exactly are the reasons for allowing her to reach her full size? So she won't be embarrassed/self-concious of her height? The kid is a vegetable, what difference does it make?
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my cousin has a son 9 years old with CP (cerebral palsy (sp) he cannot do anything on his own.. he can hold his head up and make noises like a 6 month old and just barely move oneof his hands .. otherwise he is paralyzed .. she has to give him steroids to help stop his seizures which makes his hormomes increase. he is already hitting full puberty. she still takes FULL care of him. many DR have said to inject a certain hormone in him to make him stop growing and pretty much stay like a little boy for as long as she pleases or to put him in a home. i think if someone decides to keep their child with them .. not in a home .. then they can use science to the best of its ability and try to make it easier on them .. wow i know that was a lot. but thats an article like is someone is asking is euthanasia is okay. it all depends on the person.... and i believe it is the parents choice if the child cannot decide ..
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I'm not saying that I agree with the idea, but if keeping her small is the objective, and the hormones she is given have that effect, why on earth did they need to surgically remove her uterus and breast tissue? What is the motivation for the sexual fixation?
I am definitely not in favor of unnecessary surgery.
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The motivation is that removal of the uterus will alleviate the ordeal of menstruation and possible pregnancy from potential abuse(if she was not in their care). Also the breastremoval is to eliminate potential sexual abuse.